Abstract
The Internet provides new opportunities to gather information on the population and may provide alternatives to the traditional methods of conducting clinical trials in systemic lupus erythematosus. The ‘world wide web-www’ has grown extensively in the past decade and it is estimated that there will be over 1 billion individuals on the net by the year 2005.
Notifying, recruiting and assessing patients using Internet technology are already potential uses of this electronic medium. However, total reliance on the Internet could lead to biased sampling of patients with lupus. Women with low incomes or who are unemployed are less likely to have access to the Internet. Individuals with neurological deficits may have trouble using the Internet effectively. Data collected on the web may not have high reliability and much work needs to be completed to determine the psychometric properties of information derived from this source.
One of the greatest threats to contend with is protecting the confidentiality of patient information when using electronic communication. Safeguards against inadvertent or unintended release of information must receive high priority in any attempt to use the Internet for clinical trials. Particular attention should be paid to email messages, which have the potential to be intercepted or sent to individuals without clearance to see patient information. Nevertheless, the costs to systems performance caused by security measures must also be considered and balanced against the need for access by those with appropriate authority.
A number of websites already exist for the benefit of patients and providers. Clinicians and scientists interested in the field of lupus research will need to keep up to date on the rapidly proliferating information that is becoming available. This article lists sites which can be visited now.
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